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  • Restlessness and figidy

    With all the steroids they pump me full, it leaves me restless, figidy, agitated, its a truly awful feeling. But also extremely tired...but cant sleep. Anyone haveany secrets? Im going insane.
    11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

  • #2
    I have found the only way I can sleep through the night since starting the chemo has been to take 5mg of melatonin before bed. It's a safe way to rest. My doctor also prescribed me Ativan to help with nausea and anxiety so maybe you can ask about that?
    26 Cleveland, OH
    3/01/17 - Found lump on right testicle
    4/21/17 - Went to ER. 4x3.7x2.5 cm tumor in right testicle
    4/22/17- Pre/op LDH 194, AFP 41, HCG 46, CT scan clear, X-ray clear
    4/27/17 - Right I/O. Non-seminoma with LVI. 70% EC, 20% Yolk Sac, 10% Teratoma
    5/16/17 - Markers normalize, CT clear. Stage 1B
    5/22/17 - Start 1xBEP

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    • #3
      My first recommendation would be Melatonin. You can try 3 mg. If that's doesn't work, go up to 6 mg.
      Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

      7/1/2015: felt tiny lump on side of R testicle
      7/30/2015: Ultrasound shows 2 intra-testicular masses.
      7/31/2015: tumor markers normal, CXR clear
      8/5/2015: R orchiectomy
      8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
      8/14/2015: CT abdomen/pelvis clear, Stage 1b
      8/24/2015: started 1 x BEP

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      • #4
        I take a couple of Ativan before bed. If I'm having a really rough day I'll do 10 mg of Ambien. I know a lot of doctors don't like to prescribe ambien but my PC understood my situation and gave me a small supply to take as needed. Just check with your oncology doc to make sure they're okay with it.

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        • #5
          Im prescribed 2mg ativan and told to chew them. This doesnt even slow my heart rate down. Its just a horrible restless body thing. My heart rate is typically mid 70s but since chemo started its around 115. Noticeable and annoying. Im about desperate to find a good way to rest.
          11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

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          • #6
            I tried melatonin when going through four rounds of EP but it didn't help me too much. My oncologist prescribed Ativan and a mild sleeping pill that I can't recall the name of. The Ativan didn't do much but that other blue pill worked wonders. With so many chemicals coursing through my system I figured one more wouldn't hurt and it didn't. Certainly helped keep my sanity during that process.

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            • #7
              Originally posted by Joe.shupe22 View Post
              Im prescribed 2mg ativan and told to chew them. This doesnt even slow my heart rate down. Its just a horrible restless body thing. My heart rate is typically mid 70s but since chemo started its around 115. Noticeable and annoying. Im about desperate to find a good way to rest.

              Yup, you can also put Ativan under your tongue and let them dissolve. People do this if they're having trouble keeping things down.

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              • #8
                Sleeping pills helped, but the biggest thing was getting started early in the morning... Ask them to give you steroids as early in the day as possible along with chemo, that way by night it won't have as much effect on you!
                July 2016 - Left I/O
                December 2016 - BEPx3
                All clear for 1 year!

                My Testicular Cancer Support Kit
                First Oncologist Visit Checklist
                Simplify Cancer Podcast

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                • #9
                  Hang in there.
                  Son Grant
                  dx 12/21/16 at age 17

                  BEP x3
                  Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                  2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                  Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

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                  • #10
                    This is another example of how it is impossible to predict the effect these drugs might have on any individual. I never had trouble sleeping during chemo, I had trouble staying awake. I drifted off most any time I was sitting down. A bit of insomnia would have been good.....
                    Jan, 1975: Right I/O, followed by RPLND
                    Dec, 2009: Left I/O, followed by 3xBEP

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